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Modeling delay in diagnosis of NF: under reportincg, incidence and prevalence estimates


  • Irene Rocchetti
  • Domenica Taruscio
  • Marco Alfò


In this paper, we analyze data from the Italian National Register of Rare Diseases (NRRD) focusing, in particular, on the geo-temporal distribution of patients affected by neurofibromatosis type 1 (NF1, ICD9CM code 237.71). The aim is at deriving a corrected measure of incidence for the period 2007--2009 using a single source, and to provide NF1 prevalence estimates for the period 2001--2006 through the use of capture--recapture methods over two sources. In the first case, a reverse hazard estimator for the delay in diagnosis of NF1 is used to estimate the probability that a generic unit belonging to the population of interest has been registered by the archive of reference. For the second purpose, two-source capture--recapture methods have been used to estimate the number of NF1 prevalent units in Italy for the period 2001--2006, matching information provided by the NRRD and the national register of hospital discharge, Scheda di Dimissione Ospedaliera (in the following SDO), archives.

Suggested Citation

  • Irene Rocchetti & Domenica Taruscio & Marco Alfò, 2012. "Modeling delay in diagnosis of NF: under reportincg, incidence and prevalence estimates," Journal of Applied Statistics, Taylor & Francis Journals, vol. 39(4), pages 711-721, August.
  • Handle: RePEc:taf:japsta:v:39:y:2012:i:4:p:711-721
    DOI: 10.1080/02664763.2011.610446

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